Please help us continue to provide you with free, quality journalism by turning off your ad blocker on our site.

Thank you for signing in.

If this is your first time registering, please check your inbox for more information about the benefits of your Forbes account and what you can do next!

I agree to receive occasional updates and announcements about Forbes products and services. You may opt out at any time.

I'd like to receive the Forbes Daily Dozen newsletter to get the top 12 headlines every morning.

Forbes takes privacy seriously and is committed to transparency. We will never share your email address with third parties without your permission. By signing in, you are indicating that you accept our Terms of Service and Privacy Statement.

HHS Chief Data Officer Mona Siddiqui promises that the largest health data steward "on the planet"... [+] will make its information releases connected and actionable for patients and entrepreneurs

AcademyHealth

Sometimes, the most significant promises out of Washington have nothing to do with politics.

Speaking at the 2019 Health Datapalooza meeting last week, the chief data officer of the U.S. Department of Health and Human Services (HHS) made a promise with potentially powerful clinical and economic impact.

Noting that there’s “no health care organization on the planet that’s a steward of as varied health information as HHS,” Dr. Mona Siddiqui said the department will no longer be content anymore with just “liberating” data outsiders can use. Rather, HHS will concentrate on giving out data that's actionable.

“A data set in insolation has minimal impact," said Siddiqui. "The power of the data…is only possible when data can be translated into actionable information."

In an implicit allusion to the "connected health" movement, she added, “To have the information and not connect it is a tremendous grievance.”

Siddiqui went on to list just a small part of the department’s “enormous depth and scope” of information, from how individuals access emergency care to such indirect community health indicators as flood zone information.

“We should be able to track the leading indicators for the next emerging health crisis,” said Siddiqui, who has an MD from the Johns Hopkins School of Medicine, a masters in quantitative methods from the Harvard School of Public Health and a management and engineering degree from Stanford.

“We should be able to track whether a billion dollars spent addressing a national [opioids] epidemic has had its intended impact,” she added. “But while we may be a Big Data organization, we absolutely have not been embracing our Big Data identity.”

The government-centric Health Datapalooza conference began in 2010 as the Health Data Initiative Forum in a cozy government auditorium, but in 2012 it changed its name and expanded its scale. The financial potential of releasing more actionable digital health data was suggested by a report earlier this year from Rock Health. Venture funding of digital health companies soared to $8.1 billion in 2018., up 40 percent from 2017. Over $30 billion in venture funding has been invested since 2011.

The conference tried to maintain a bit of a funk factor by, for instance, inviting onstage during the opening plenary a group of patient activists who felt completely unrestrained by any semblance of a button-down dress code. Of course, this could not live up to the 2015 meeting, which I described then in a post entitled, “A Shot of Whiskey, A ‘Data Hippie’ and Capitalism.” Still, the welcoming vibe for patients was carefully maintained throughout.

For example, while Siddiqui and other government speakers enthused over empowering entrepreneurs, they were equally careful to emphasize the clinical, economic and ethical imperatives to empower individual patients. Referring to a panel of patients who’d spoken in the meeting’s opening plenary, Siddiqui noted that health care professionals “cannot begin to imagine the many different ways in which data can be unified, leveraged and really change the lives of so many people.”

A panel of executives from the U.S. Digital Service (USDS)and the Centers for Medicare & Medicaid Services (CMS) emphasized the patient-empowering intent of recent draft regulationsfrom CMS and the Office of the National Coordinator for Health Information Technology. Those prohibit “information blocking” and mandate that patient health information be shared in a digital format readable by apps.

The top priority was “to ensure all the data is flowing,” said Alexandra Mugge, deputy chief health informatics officer at CMS. “We really had the patient in mind and wanted to ensure the would have access to information to be better consumers of health care and also control where that information would be flowing and how it would be used.”

However, Shannon Sartin, executive director at USDS, cautioned that true interoperability has not yet arrived. “We’ve still got a ways to go.”

I’m a consultant specializing in quality of care, patient empowerment and web-based health. I also serve on the boards of a medical journal and a health care-related

…

I’m a consultant specializing in quality of care, patient empowerment and web-based health. I also serve on the boards of a medical journal and a health care-related foundation and am an adjunct associate professor of medicine at Northwestern University’s Feinberg School of Medicine. Earlier in my career, I was a reporter for the Chicago Tribune, where I was nominated three times for a Pulitzer Prize. I left to write what would become the critically acclaimed book, Demanding Medical Excellence: Doctors and Accountability in the Information Age, then went to work for a large consulting firm before heading out on my own. I’ve worked with clients as diverse as drug companies and consumer advocates and, at various times, have had my writings pilloried and praised by left-wingers and right-wingers alike. Though I’m all in favor of optimism about medical breakthroughs and health policy achievements, I like to apply the phrase Ronald Reagan made famous: “Trust, but verify.” This blog reflects that philosophy.